New health bill replaces hope with fear in cystic fibrosis patients

http://thehill.com/blogs/pundits-blog/healthcare/340084-new-health-bill-replaces-hope-with-fear-in-cystic-fibrosis

Letter from Preston W. Campbell, III, M.D.

As the Senate considers its proposal for healthcare reform, I urge lawmakers not to forget the millions of people who will rely on this legislation for lifesaving medicines and care. There is much more at stake with the Better Continue reading New health bill replaces hope with fear in cystic fibrosis patients

OWN IT: Cystic Fibrosis Survival Rates in the United States vs. Canada

A study published in the Annals of Internal Medicine concluded that “the median age of survival [is] 10 years higher [for CF patients] in Canada than the United States.”

If you’re wrapped up in the world of cystic fibrosis news like I am then you’ve probably seen this study floating around the Internet for the Continue reading OWN IT: Cystic Fibrosis Survival Rates in the United States vs. Canada

Tell Congress to Oppose the American Health Care Act

The House of Representatives will soon vote on legislation that would jeopardize access to affordable and adequate health care coverage for people with cystic fibrosis.

The bills would effectively eliminate Medicaid expansion and alter Medicaid’s funding structure in a way that would reduce access to care Continue reading Tell Congress to Oppose the American Health Care Act

‘Stunning’ gap: Canadians with cystic fibrosis outlive Americans by a decade

‘Stunning’ gap: Canadians with cystic fibrosis outlive Americans by a decade

Continue reading ‘Stunning’ gap: Canadians with cystic fibrosis outlive Americans by a decade

Medical Records Are Crucial — By Beth Sufian, JD

In this blog we provide information related to medical records and their importance to a person with CF.

Nothing in this blog post is meant to be legal advice about your specific situation and is only meant as information.  

Medical Records Are Crucial

Detailed and accurate medical records can help with a variety of issues. Medical records are important for those applying for Social Security benefits or undergoing an SSA Continuing Disability Review. Continue reading Medical Records Are Crucial — By Beth Sufian, JD

CALL TO ACTION – The Affordable Care Act

From the CFF…
We are sending this out today to let you know about an urgent need for action.  Wednesday, the Senate took a significant step toward repealing the Affordable Care Act. As critical health care reform decisions are made, it is essential that Continue reading CALL TO ACTION – The Affordable Care Act

Ask Your Questions to CF Roundtable

Do you have questions for our CF Roundtable columnists?

The US Adult CF Assn (USACFA) publishes CF Roundtable. USACFA’s directors consist of all adults with CF. Some of our columnists, although not directors, Continue reading Ask Your Questions to CF Roundtable

Costly Vertex Drug Is Denied, and Medicaid Patients Sue

Kalydeco, a $300,000-a-Year Cystic Fibrosis Treatment, Sparks Legal Battle in Arkansas and Shows Dilemma States Face

LITTLE ROCK, Ark.— Vertex Pharmaceuticals Inc. VRTX -0.72% ‘s $300,000-a-year cystic-fibrosis drug has sparked a legal battle here, where the state’s Medicaid program is restricting Continue reading Costly Vertex Drug Is Denied, and Medicaid Patients Sue

Social Security Administration (SSA) to Host Special Teleconference for Cystic Fibrosis Community about Proposed Changes to Disability Benefits

Friday, May 10, 2013 (1:00 – 2:30 p.m. ET)
The Social Security Administration (SSA) will host a special teleconference for the cystic fibrosis community on Friday, May 10 about proposed changes to disability benefits. https://www.federalregister.gov/articles/2013/05/07/2013-10702/medical-criteria-for-evaluating-cystic-fibrosis Continue reading Social Security Administration (SSA) to Host Special Teleconference for Cystic Fibrosis Community about Proposed Changes to Disability Benefits

Social Security Benefits – Guest Blog by Beth Sufian, JD

There are any people with CF who receive some sort of monthly Social Security benefit. The Social Security benefit gives the person a monthly cash payment to help with living expenses. Most people with CF want SSA benefits because they qualify for Medicaid or Medicare if they receive the SSA Continue reading Social Security Benefits – Guest Blog by Beth Sufian, JD